I can remember going through all of the stages of the grief cycle:
~ Denial - the test was wrong, we needed to get another test, it was a mistake, he was fine.
~ Anger - why us, why him, what had we done to deserve this?
~ Bargaining - if we had just been tested before we decided to get pregnant, if we hadn't done things wrong in our lives, this wouldn't have happened to our child...this was something Jeff and I briefly struggled with. The enemy was trying to work his way into our psyche by trying to get us to believe that we were being punished for something we had done in our lives. Thankfully, we both know we have a loving and forgiving God, and this is so far from the truth.
~ Depression - our son is sick, he will always be sick, he will never get better, all the dreams we had, all the hopes and wishes we had for him seemed to come crashing down on us in those first few days.
~ Acceptance - prayer is powerful, our family and friends are so supportive, and God is our rock. He is there in our darkest of hours, when we think we can't go on, when we think there is no hope, He is there. To lift us up, to shine a light, to whisper that He will never leave us, and to show us that with Him on our side, we will learn to live again.
And we did, shortly after his diagnosis we saw a team of people at the Cystic Fibrosis Clinic in Fort Wayne. Brayden will always have a team approach to his treatment including the doctor who is a pulmonary specialist, nurses, a respiratory therapist, nutritionist, social worker, genetics counselor, and pharmacist, in addition to his pediatrician. He will be seen by this team every 3 months. From the beginning he was put on 2 medications; enzymes to help him digest and get the most from the breast milk (and eventually cow's milk and food), and a liquid vitamin with A, D, E, and K vitamins, specially made for those with cystic fibrosis. We also give him breathing treatments with a nebulizer and perform chest physical therapy twice a day to help keep mucus out of his lungs. This was all a bit overwhelming at first, but after a few weeks of the routine, this has become normal for us, and life is going on...and not just going on, life is joyful, life is happy, life is full of wonderful, precious, moments that make me stop, dead in my tracks, thank God, and tell myself I want to remember this forever.
Brayden eased into all of these changes like a champ. He is such a good baby, and helped take some of the anxiety out of things for Mom and Dad by being so calm. We know that as he gets older and becomes more aware of his surroundings, there will be some struggles, but we know that God is going to walk with us through each new challenge.
Those first few weeks after the diagnosis we had time to process everything and spent a lot of time praying and seeking support from family and friends. Though we don’t have the answers and we don’t yet know how, we truly believe that God is going to use Brayden to glorify His kingdom. We believe that he is a special little guy, and that God is going to heal Brayden and use his life to bring others to the Lord.
Brayden, Jeff, and I feel blessed to have the family and friends that we do because we know that we can’t walk through this alone. God has put special people in our lives for a reason. We know that all of you will pray for our little guy, and be supportive through all that life will bring our way. We want to thank you for your prayers and support, and will keep you updated with all of Brayden’s triumphs. We know that God is working and will continue to work through Brayden, and our prayer is that through his life, God reaches many other lives. We believe that Brayden truly is a miracle baby. We will continue to trust the Lord and know that He wants Brayden to be healed.
"And if our God is for us, then who could ever stop us..."
Christ Tomlin - Our God
Love this...one of several songs that helped me through this difficult time.
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